CPAP machine helps sleep apnea but still feeling dopey

[chris677]

Hello TristramShandy

I'm partially recognised me in your story.
I've had severe fatigue since month and fog brain, i work 2 weeks than be stopped 2 weeks or on holiday.But i can work. I know the situation is very difficult to live.
The first step for me is to know if they is psychological or not.I've done a sleep study with too much awakening (14/h) and PLM (periodic leg movement).I've believe until July it was psychological (i've had a hard period last summer with asthenia and 2 week stopped).I take paxil since 5 years but try to go down each but my fears of depression has obliged to take paxil again.I know paxil will give me PLM and i supposed more awanking. so i'm in the same process than you : takking off or reduced med and stopped cafeine.
You have to know if there is psychological or not, and how long have you been on antidepressant ? at which dosage ? wich antidepressant ? because if you take since 10 years it's not the same than 6 month.
even you don't know, do another sleep study : to have a doctors you have to call one or two times a day secretaries of the doc and ask if there is someone who has cancelled this apt.
How many time you sleep ? are you awake at night ? when did you go out of bed ? did you spleep on the afternoon ?
Why are the depression coming again (have you solve your probems/cause ?)
You can have other sleep disorder than OAS : PLMD , hypersomnia or narcolepsie

[chris677]

and how many times are you in this situation ?

[49er]

Hi there,

One thing to consider as one who slowly tapered off of a psych med cocktail several years ago is what looks like a relapse might be withdrawal symptoms, particularly if you tapered too quickly. For more information, please visit http://survivingantidepressants.org/index.php?/index. That could also be contributing to your feeling of dopeyness by the way.

49er

I'm new here. And, having just read this entire thread, I'm amazed at having found somebody on the other end of the earth (John in Tasmania, aka Tassie Devil) who has the exact same "mysterious" problem as me. I'll try to put it succinctly, along with the relevant variables (equipment, etc.).

I'm 46, male. Three in-clinic sleep studies over the past couple of years resulted in a diagnosis of "mixed" or "complex" apnea, meaning I have some obstructive apnea events and some central apnea events. I too was sold the dataless S9 Escape "brick". I too used the Sleepyhead software to confirm that the S9 Escape was not capable of providing any of the data that my doctor claimed to be reading. I now have this equipment:

- ResMed S9 VPAP Adapt (adaptive servo machine)
- ResMed H5i humidifier
- ResMed ClimateLine heated tube
- ResMed Quatro Air mask

I've been on this combination of equipment for at least 6 months, probably longer. But the problem is this: every day I wake up feeling indescribably dopey, foggy headed, sedated, confused, dizzy, disoriented. Regardless of how much coffee I drink or if I take Provigil, or even hardcore stuff like RedBull, it takes me hours to be even awake enough to safely drive a car. And even then I'm not really myself until eight or ten hours later, which is very late in the day for most people.

This situation has gotten steadily and slowly worse. In late June I had to quit working and go on disability. Tassie Devil was kind to hypothesise what a nightmare this would be for a person trying to work. I can confirm that it was, in fact, a total nightmare.

My situation was complicated by the fact that I was on antidepressant medications. After years of going to doctors and getting tested for everything under the sun (thyroid, etc.), I eventually decided to undertake the unpleasant and months long step of tapering off of both the antidepressant meds in order to rule them out as possibly causing fatigue or sedation. I did this with the help and supervision of a psychiatrist and a psychologist. It goes without saying, but I'll say it: don't even think about attempting that on your own! It has been extremely unpleasant, but has gone exactly according to plan. Now that I've been off of the last of those meds for at least three weeks, the outcome is this: As expected, I'm depressed and anxious, but the fatigue, brain fog, or dopiness, whatever you want to call it, is just as bad as it ever was. For this reason I will soon go back to the head shrinkers and get on some other med(s) for depression and anxiety.

Also, in addition to eliminating all prescription meds, I stopped alcohol and even spent time without caffeine. Both deprivations sucked profoundly, but neither improved the situation. I've resumed moderate use of caffeine, just to be able to do things like bathe, shave, dress, or walk the dog some time before the sun goes down. I'm also relying on caffeine to exercise every day as a bulwark against the depression. The exercise is a bizarre experience because I am so mentally inept and so tired that it feels something like a forced march. But this strange exhausted exercising every day for the past couple of months has allowed me to refute yet another hypothesis from my general practitioner doctor and my psychologist: they had been saying that proper diet and exercise would sort everything out. It, and a fairly healthy diet, have not made a bit of difference in this brain fog situation.

As of yesterday I'm once again trying out the prescription drug Provigil (it promotes mental alertness). The Provigil I took this morning is the only thing enabling me to even figure out how to register my account here today, fill out the profile (equipment, etc.), read this long thread, and compose this reply. Even with the Provigil, today has been very difficult. It is relevant to mention here that I am, or was, a professional IT worker. My point is that, underneath this permanent fog there is supposedly a brain that knows several programming languages, etc. The Provigil brings that brain somewhat into the forefront, but the cost is insomnia till 3 or 4 in the morning, along with a general feeling of tension. Because of this, I can only take Provigil a couple days per week.

The last time I saw the sleep doctor he told me that the data coming off of the S9 VPAP Adapt machine was "near perfect" and that my problem must be psychiatric and to come back in 6 months so he could read the data from the machine. Any of you with a history of mental health or emotional problems will recognize this standard reaction by my sleep disorder doctor. I would assert that it is an unwritten codification of the so-called "stigma" against mental/emotional health problems. But this is not the forum for that opinion.

My next move here, now that I'm free of any meds that could be blamed for sedating me, is that I'm going to find another sleep disorder doctor. When I asked this doctor if he would consider bringing in a colleague for a second opinion, he became defensive and told me I should not bother because all other sleep specialists in the city would not be able to fit me in for several months. I live in one of the biggest cities in the world.

I'll re-post here with an update whenever I have any progress to report, whether success, failure, or more ambiguity.

I'd also like to say thanks to everyone who spends so much time replying to all these conversation threads and questions.

[49er]

Tristam Shandy,

You might want to start a separate thread regarding your situation to avoid confusion and get more responses.

49er

[Tassie Devil]

Have not been lurking here for awhile and have just read the posts from TristramShandy and Chris677.

I've done quite a bit of further Googling on this problem of True Residual Sleepiness (TRS) and article after article says more research needs to be done. Bottom line conclusion at the moment appears to be that 10% or so appear to suffer after using CPAP and about the only remedy at the moment is to use prescription drugs to "wake up", something no one welcomes.

There is no doubt that in my case I do get better sleep - up to 6 hours compared to 5 or so without CPAP. But it does seem as if I'm getting too much sleep as it takers hours and hours to start to feel awake.

Suggestions were made earlier in this thread that the brick Escape machine should be replaced by one over which I had more control and could monitor better. I discussed this with my lung specialist but he was dubious at that idea as the settings of the Escape here are the result of an overnight stint in hospital with multiple leads connected everywhere. Fiddling with pressures etc would be unlikely to result in an improvement of TRS. He hit on the notion that I was suffering from Restless Leg Syndrome (RLS) as the hospital test showed leg movement during REM. So he prescribed me Sifrol, starting at 0,125 grams and ultimately to build up to o.5 gms daily.

Ye Gods Sifrol is nasty stuff - or at least it was for me! Dizziness, fatigue, loss of vision focus .... yuk, I gave it up after 2 nights and still find it incredible such a small dose of a drug could have such a dramatic affect. But then again I've never been into the drug scene past alcohol. I have yet to go back to the Doc and confess my sin of abstinence (of Sifrol I mean).

I'm now 79 and might be past the point where the brain can be trained up to accept a new nightly routine of CPAP. Yes I might "suffer" from RLS but it really does not bother me so forget that. And it is possible I am experiencing a post-polio syndrome as I had polio at age 3 but did not suffer any limb paralysis. But other side affects of the polio have come to light. One of the kidneys is only operating at 10% and this is being continually monitored by my GP. So it is possible the RLS is also a byproduct and research suggests that sleep apnoea is another.

So what to do?

There appears no clear and easy answer so I'm experimenting with only using CPAP some nights. Theoretically, if CPAP is helping sleep, as appears to be the case, then general health should be better. But continued use invokes a bad case of TRS which is not evident after a night of "normal" non CPAP use. Research on TRS suggests that it can be so bad as to make driving dangerous and I empathise with TristramShandy in the work situation. It reminds me of an experience 30 years ago when the Doctor put me on some anti histamine tablets in an attempt to counteract a suspected allergy problem (although the only thing reacted to was a common grass mold). I persevered with the tablets for around a year, working in a semi fog, until the decision was made that the cure was worse than the disease. That might well be the case with CPAP for me.

OK, it is not the end of the world. I'm still alive, unlike many classmates, and health otherwise is not too bad. There are millions of people in the world living in misery and bad health so TRS and RLS are nothing in comparison. At the moment it appears I'm in with the unfortunate 10% who react adversrely to CPAP. And that does not seem due to a poor machine, a leaky mask or all the obvious reasons. So I'll be realistic, avoid feeling sorry for myself, experiment with an odd CPAP routine and see where that leads.

John

[Julie]

Hi, just on the off chance... have you been tested for e.g. thyroid problems? Low T? Vit D levels? All of those can make a large difference to how you feel.

[Tassie Devil]

No, but thanks for the tip. I'm actually seeing my GP tomorrow so will follow it up with her.

BTW a sinus reaction was also suggested to me, something I omitted to mention above. So I do use Sinoclear nasal and sinus congestion relief, one 180mg Telfast tablet and a couple of squirts of Rhinocort Aqueous first thing in the morning after CPAP and it helps a bit - possibly clearing the head up a bit faster.